My mother was a beautiful, active 62 year old woman, until one visit to the doctor changed her life and her family's lives forever. She was having terrible headaches, so she went to a neurologist who did a CT scan. The CT scan revealed an aneurysm on her brain stem. Instead of giving her time to absorb this information, she was told to go home, pack her things and admit herself into the hospital ASAP before it ruptured.
I drove all night from Florida to Tennessee to be with her for her surgery. She was scared to death and just knew that she was going to die. I cannot believe that I did not realize or that her doctor did not realize how serious an aneurysm on the brain stem was. I did not even know what the brain stem did.
They performed the surgery the following afternoon. It took 5 hours and when the surgeon came out, I knew something was terribly wrong. The aneurysm had ruptured and it took 1 1/2 hours to stop the bleeding and he could not tell us what damage was done. The surgeon stayed up all night with her in recovery and we saw her the following day. She was asleep but responsive. She could move all her limbs, could hold up the correct number of fingers and we were joyful that she survived. She was moved to ICU that afternoon.
When I saw her in her room that afternoon, she was no longer responsive, and the ICP monitor(monitors the swelling of the brain) was at 35(the desired range for her after surgery was 10-20). We were told they were treating it with medication. We didn't know any better. The next morning we get a phone call to come to the hospital right away. The swelling in her brain had gotten out of control They did surgery, removed 1/3 of her cerebellum because it had died, and she suffered a brain stem stroke because of the swelling.
Now we know that the surgeon should have watched her more closely the day after surgery instead of the night of surgery. Your peak swelling occurs 24 hours after the damage is done. Why didn't he know that? The brain stem stroke left her completely paralyzed and she was placed on a ventilator and had a feeding tube. We were devastated. How could this have happened? We were told aneurysm surgeries were routine. However, they did not tell us, they never had an aneurysm surgery on the brain stem before.
It has been three months since the surgery, my mom is off the ventilator and they are working on removing the trach. It is capped now. She is still on the feeding tube. She can swallow some, but it goes to her lungs, she cannot talk, but is making some sounds, she has very limited movement. She has beaten the odds so far, in her recovery, we can only pray that she can at least get some of her mobility back. This independent, active woman is now totally dependant on someone else for everything.
I guess, what I want to let everyone know that reads this is, please if you have the time like we did, go to a hospital that knows how to handle your type of aneurysm. My mother's hospital had no idea. They did not perform the surgery until the next afternoon, so we had plenty of time to research and get her to a hospital that was prepared for this type of surgery.
I will love her no matter how much she recovers, but I cannot accept that because we did not choose the right facility her life as she knew it is over.
Update 23 Nov 1999
Mother has regained use of her legs, is trying to walk with assistance, but has trouble with balance. She has regained some use of arms, that is coming slow. The stroke has given her double vision in one eye and just about no vision at all in the other one.
She still has a trach and feeding tube and she is very depressed about this. She is making some improvement in swallowing but not much. Her vocal cords are not working completely and is having problems with speech. I really need information from someone out there that might be able to give us some direction to take on this.
Again, I apologize for being out of touch, but my life is consumed right now with trying to help my mother thru this and your website and emails are such a comfort.
Update 19 Nov 2000
After a two year struggle with her swallowing problems, my mother passed away in her sleep due to aspiration pneumonia.
She had come so far physically, she was regaining her balance, was walking with maximum assistance, however, no one could help in regaining her swallowing.
She was the bravest person I will ever know. Her strength and willpower inspired me.
I know she is in a better place with God and she is walking and talking.
Thanks so much for everyone's support. I would like to stay on the email list. This family has been an inspiration to me and my mother could not wait for my updates that I received from the email and the other narratives.
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